Support Matteo's Journey to a Second Chance

My name is Crystal Golinello and I am Matteo's mom.

Matteo was born in July of 2020 with a severe heart defect called HLHS. He had his first major open heart surgery at 1 week old and a ventricular assist device called the Berlin Heart was implanted at 2 weeks old (see picture). He was listed for transplant and the wait had begun.

Matteo spent his first Halloween, Thanksgiving, and Christmas in the hospital waiting for a transplant. After 8 months waiting inpatient, we received "the call." On March 19th Matteo went through his second open heart surgery and received his gift of life.

Matteo came home a few weeks later and after 9 months of a divided family (Matteo and I in Gainesville, and his dad and brother in Palm Bay 3 hours away), we were finally able to enjoy being a family of 4!!!!!

For the next 2 years, Matteo enjoyed life outside of the hospital, going to parks, going to school, spending time with big brother, and just being a typical toddler. He is a bubbly, outgoing, energetic 4 year. Anyone who know him knows that he lights up every room with his smile!

In July of 2023, Matteo had his first heart Cath post-transplant and we were completely blindsided! Matteo was diagnosed with Moderate CAD (coronary artery disease). At this point, although the disease was fairly severe, the team was hopeful that with additional meds, they could slow or even stop the progression of the disease. In September 2024 he had a repeat Cath and unfortunately the disease had progressed.

At this time, his left CAD is severe and one of his arteries is 90% blocked. With his size there is nothing they can really do to help with the CAD. They cannot stent. With a 90% blockage he is a severe risk of "sudden death." This is not something you want to hear when referring to your child!

His transplant team is recommending re-transplant. We have started the process of relisting and will be inpatient for the foreseeable future.

We are blessed that by some miracle, that the CAD has not affected his heart function or his demeanor, and that he has as much energy as ever! We pray that he will continue to have good heart function!

We pray that in God's plan, Matteo will receive his second gift of life and that he will recover and be able to return home with his family and friends who miss him already!

We are not sure what the wait time will be, and I (mom), am taking a leave of absence in order to be here at the hospital with Matteo. We have unexpected medical bills, cost of living, gas for dad and brother to drive back and forth, and other financial burdens and appreciate any help that we can get.

In addition to all of those expenses we are also obviously trying to give Matteo the best chance at getting the perfect heart for him as soon as possible and that heart may be at a different hospital. We are looking at the possibility of having to relocate to another part pf the country to give better odds. That might be North Carolina, Boston, or Texas. This would put an immense strain on our family but we will do what we have to in order to give our precious boy the best chance at life possible.

Thank you for considering, sharing, and of course for your continued prayers and positive thoughts!

Sincerely,

Mom and Dad